Activism/Advocacy

Watching your child undergo treatment for childhood cancer is not easy

*this is stolen from http://www.acor.org/ped-onc/activism/action.html*

What can we do?
As the editor of these pages, I realize that each parent will be inclined or able to help to a different degree and with different abilities. Whatever anyone can contribute in whatever manner will help, and remember, sometimes just sharing your experiences with other people will help, by making another person aware that childhood cancer does happen and is a real problem.
Awareness.
The public needs to be aware that childhood cancer occurs in 1 in every 330 children by the age of 19, and that childhood cancer has not yet been "cured". Awareness will hopefully lead to increased private donations as well as increased governmental funding of childhood cancer research. For your own information and if you need this information to include in the literature you are preparing for an awareness event or fundraiser, I've gathered childhood cancer statistics (and links to references) on a ped-onc page:
Childhood cancer statistics on this web site
Legislation.
Be aware of legislation and write our representatives when appropriate. (CureSearch and Candlelighters, both below, often alert us when issues are at hand.)
Donations.
If you want to know something about the financial situation of a charity, go to:
Charity Navigator
Guide Star
Causes of cancer.
Work with etiologists to determine the environmental causes of childhood cancer. Take part in and encourage surveys and childhood cancer registries. Recognize clusters of childhood cancer that should be investigated.
Causes of childhood cancer on this web site
Environmental groups on this web site
Early diagnosis. Most childhood cancers will be more easily treated and cured if it is diagnosed early. But early diagnosis is not always the case. When I first signed on to the Ped Onc listserve, I was amazed by the diagnosis stories as new members signed on and introduced themselves. I realized that my own son's swift diagnosis was rare. I read story after story of cancer, misdiagnosed and instead attributed to a common childhood complaint or behavioral problem. These parents were told by their physicians: "She loses her balance because she has a sinus infection"; "He's pale because it's winter"; "If she's irritable and not eating you must improve your parenting"; "It's just an ear infection, I'll write a prescription for antibiotics." Instead of receiving treatment, these children were sent home while the cancer in their bodies divided and grew. By the time they were correctly diagnosed, often the children were desperately ill and rushed to the hospital. The treatments began even though it was difficult for their bodies to tolerate the essential chemotherapy demanded by their illnesses.

I was so affected by these stories that I gathered the writings of many parents into the "Signs of Childhood Cancer". If enough interest is generated, these "signs" could be produced as a small booklet. A short list of the signs is available as a printed business cards. Also in the works is a poster which would be distributed to pediatricians' offices.
Signs of Childhood Cancer on this web site

Cooperation.
Work cooperatively with and be aware of all childhood cancer interest groups. The next section includes a list of childhood cancer organizations.

Awareness Organizations
There is a plethora of organizations, small and large, that work to raise awareness for childhood cancer and to advocate for children who have or had cancer. Most of these organizations also help cancer families in one way or another. CureSearch, the fund-raising arm of the Children's Oncology Group (COG), is probably the largest such organization in the US. Candlelighters is another large and influential awareness group; it is founded and run by parents of children who have or had cancer.
Alliance for Childhood Cancer - announced Spring 2002 - Web Site.
Candlelighters (US, National) and Canadian Candlelighters. These organizations have so much to offer that I cannot list it all here. Please, visit their web sites.
CureSearch (The fundraising/awareness arm of COG). NCCF has planned activities in September, the month designated for childhood cancer awareness, for the past several years (2003 note).
CureSearch Advocacy page
Reach The Day wristbands
St. Baldrick's Day. Begun in 2000, St. Baldrick's Day is just before St. Patrick's Day. On St. Baldrick's Day, volunteers shave their heads to raise money for childhood cancer. (2003 note.)
The next link takes you to my grand listing of all organizations that are concerned with childhood cancer. Listed are professional societies, as well as support (Candlelighters) and fundraising organizations.
childhood cancer organizations on this web site
Children's Oncology Group, Patient Advocacy Committee
The Patient Advocacy Committee was instituted by COG to include the perspectives and input of childhood cancer survivors and families in the design and implementation of cooperative group clinical trials.
Missy LayfieldCOG-PAC, Chair cog-pac@cfu.net
Who they are, what they do, how to contact them
A Plethora of Childhood Cancer Awareness Projects
Miss America works to raise awareness for childhood cancer. (2004 note)
Childhood Cancer Awareness Stamp Letter Writing Campaign. Help get a US Postal Stamp for Childhood Cancer. Sign a petition at the ThePetition site. Also on the Candlelighters site.
Cooking for a Cause. Cookbook with proceeds going to childhood cancer concerns.
One Voice USA - fundraising and awareness.
Gold Ribbons for childhood cancer awareness.
Deborah Pryce's web site sometimes has information on childhood cancer awareness activities.
The Children's Cause - "dedicated to accelerating the discovery and access to innovative, safer, and more effective treatments for childhood cancer through education and advocacy."
The International Childhood Cancer Quilt Project.
Begun as an idea in online mailing lists, the Childhood Cancer Quilt grew quite large and was presented to the world at The March in September 1998. As of 2003, the quilt is still growing, although I do not know who (if anyone) is in charge of a "national" quilt. See below for information:
http://home.comcast.net/~childhoodcancerquilt/index.html
License Plates
Virginia Childhood Cancer Awareness
Alabama Curing Childhood Cancer
Ashley's Bracelets from Cancer Warriors: Help Ashley Stomp Sarcoma in 2005! by purchasing Ashley's Bracelet. Each bracelet purchase goes towards Sarcoma Research.
Cookbook from Dylan's Dream "This Cookbook is filled with over 340 delicious recipes for you to use and share for years to come as well as unforgettable dedications located below each recipe to honor someone who has had or currently under going cancer treatment; followed by the name and state of the person who submitting the recipe."